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Information and quality of life in palliative care

Gesa Betcke

Gesa Betcke

February 14, 2024

reading time

15 min

In this second part of the interview with Gesa Betcke, we shed light on the development of palliative care, clear up misunderstandings and show that palliative care focuses on quality of life right up to the end.

Gesa, you have been working in palliative care for 35 years. How has the field changed over the years?

Nowadays, palliative care is a recognised specialist discipline. People talk openly and honestly about dying and death, but also express this sensitively, taking into account the feelings of the individual person concerned. Many patients find it very difficult to be confronted with bad news. In many cases, it takes several intensive discussions to prepare them for what is to come. Whichever path they decide to take, empathic communication takes centre stage.

The focus of palliative care is on the whole person; we take into account the psychological, physical, social and spiritual dimensions of the patient. A central and decisive element of comprehensive palliative care is the involvement of relatives. In this context, we speak of a "unit of care", which encompasses standardised care for patients and their relatives. What has changed significantly in recent years is the family environment and, in particular, the definition of the closest relative and the so-called primary carer. The aim is to identify the person in the patient's personal environment who can represent the patient if he or she is no longer able to express his or her wishes. Holding a "round table" serves to clarify the current situation and the expected course of the illness, taking into account family resources and burdens.

The strengths of interprofessional collaboration in palliative care have been fully recognised and developed in recent years. The different perspectives of the various professions lead to an overall result of professional dynamism. Together we are strong - that is something I can feel again and again. The cooperation between nurses and doctors in everyday professional life is particularly worth emphasising here. I believe that both sides have gradually realised that it is crucial to work hand in hand. Both professions are dependent on each other. The flat hierarchy has thus become another focal point within palliative care.

Are there any misconceptions or prejudices about palliative care that you would like to dispel here?

There is a misconception that people "only die" on the palliative care ward. But in fact, many patients are discharged home or transferred to a long-term institution or the Zurich Lighthouse. Patients are only allowed to stay on the palliative care ward in hospital for a limited period of time. The aim is to optimise symptom control. After this defined period, however, they have to leave the ward again and move to a long-term institution or return to their home environment with outpatient support.

There was also a time when palliative care was wrongly equated with "exit", which is of course incorrect. This confusion must not be allowed to happen. What we offer in palliative care is "palliative sedation", especially in the terminal stage when patients are suffering from symptoms that cannot be controlled. In such cases, we can use medication to put them into a controlled sleep.

I have to say, however, that because "exit" has become an issue, palliative care has also been able to grow, as the topics of dying and death have been discussed publicly - although, as I said, these two approaches should not be confused with each other.

What are the biggest challenges you face in your work and how do you deal with them?

Above all, it is the great emotion that emanates from the patients; all the thoughts that surround the term "palliative". When they come to us on the ward, many patients immediately say: "But I'm not ready to die yet". In such situations, we take the time to help them and their relatives to understand that palliative care also opens up other paths with a great deal of sensitivity and sensitive dialogue.

It is also challenging when people come to us who have not been given sufficient or comprehensive information about palliative care and the course of their illness by the doctors treating them. Our task here is to inform them as carefully as possible about their situation and treatment options.

There are also challenges such as cost pressure: our patients are allowed to be treated on our ward for 14 to 21 days, after which we must have a follow-up solution. As a result, the palliative care ward is also characterised by a certain fast pace.

Clinic for Internal Medicine

Our competence centre for palliative care

In situations of severe or chronically progressive illness, we are there for you. Our palliative care stands for pain-relieving care and attentive support.

We were just talking about emotions and the emotional - how do you deal with the emotional aspects of your work?

The longer I've been in this job, the more I've learnt to switch off more quickly. I used to take patients home with me in my mind, but now that no longer happens to me, or only very rarely. It helps me to briefly discuss emotional aspects with my family and friends. Walking my dog in nature, listening to music, reading or cultural activities provide me with a change of pace and distraction.

And how do you manage this as a team?

We have created a lot of spaces for the team to process the emotional aspects of our work: Team meetings, specialist care discussions and interprofessional case discussions. If necessary, we can also convene ethical case discussions under the moderation of members of the in-house ethics forum if the situation is very serious.

Several department-specific rituals help us in the processing process. Saying goodbye as a team", a monthly round of reflection with the involvement of the counsellor, has established itself as an important measure for personal detachment from stressful situations. The daily 2 p.m. report to describe the situation of the day and the weekly debriefing every Friday are also on offer. Our very close relationship with the Head of Palliative Care, Dr Katja Albrecht, or the specialist expert, also plays an important role: if we have a problem, we can turn to them and talk about it. In addition, Silvana Gübeli, Co-Head of Specialised Care Ward, and I always have an open door for our employees and give them space and time when they need to clear their heads or simply let their emotions run free.

And one very important thing: humour. In our team, we help each other and we often laugh.

If we were to take one thing away from this conversation, what would it be?

I think the most important thing is to live in the here and now. You shouldn't put things off and say: "I'll do that later or when I'm retired". You can suddenly fall ill with a life-threatening illness. It can happen to anyone. That's why I always think: "Come on, let's live life now. Don't put anything off".

Another thought I often hear from family members: don't make promises to your partner that you will care for them at home when the person is dying. Relatives often feel guilty if it is not possible to care for them at home.

And last but not least, it makes sense to make a living will and to think ahead about what you actually want if you are no longer well and that you have a contact person or reference person for these issues.

Portrait photo of Gesa Betcke

Gesa Betcke

Co-head of Specialised Palliative Care Unit (SPS), Clinic for Internal Medicine

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